Maricela Berumen sees her experience living with HIV as tightly bound by the trappings of her Latino culture.
In 2003 the 30-year-old Hillsboro, Ore., resident was infected by her unwitting partner, the father of her fourth child. She blames the man's long-standing unawareness of his HIV status in part on the machismo that she said keeps Latino men away from the doctor 'unless they're practically dying.'
'I didn't have to go far to get judged,' she recalls of the early days of her infection. 'My family was already doing that.' When she told her mother, two brothers, and six sisters, they tore into her with accusations and with warnings that she was going to infect her children through casual contact. (Although she did not discover her infection until she had been breast-feeding for five months, her youngest child is HIV-negative.)
'That experience alone helped me want to do something about it,' she says of her motivations toward advocacy for HIVers. 'I don't want to be one more woman who's going to shut down in her shell.'
Reflecting on how she'd managed to remain in the dark about HIV even as an adult, Berumen attributes her ignorance in part to what she said was her family's typically Hispanic reluctance to discuss sexual matters. Hoping to break that cycle, she's decided to speak out--and not just to her eldest son, who is 14. After participating in a local 'HIV Stops With Me' campaign--appearing on a Portland billboard and a series of handout cards--she spoke at an event for National Latino AIDS Awareness Day about living with the disease.
She was thrilled by the response and emboldened to use the experience as a springboard toward an ongoing fight against HIV in her community.
'They came up and shook my hand and told me, 'You're an amazing woman,' ' she says. 'I was like, It's working! It's going to take time, but it's working.'
Berumen's story is one of countless illustrating the need for specific campaigns to target HIV messages toward hard-hit populations, especially ethnic minorities, in culturally tailored ways--for example, by providing materials in both English and Spanish. Filling this need are various annual AIDS awareness days geared toward specific groups [see accompanying article]. While the events surrounding these days tend to focus on HIV testing and educating individuals about the disease, there are also benefits for people already living with the virus. Organizers cite fighting stigma as one of their major goals, and many communities plan forums or health fairs that help HIVers find proper care and develop skills to cope with the disease.
'It helps in terms of advocacy,' says Damon Dozier, director of government relations and public policy at the National Minority AIDS Council. Last year the Congressional Hispanic Caucus held a briefing on Capitol Hill with Rep. Hilda Solis about how the Ryan White Act's reauthorization would short-shrift many communities if passed in its then-current form.
'I think it helps in terms of information, in terms of personal health and personal wellness,' Dozier adds. 'And I think it helps in terms of community support and having people in the community understand that if you are HIV-positive, you are still a member of the community.'
National steering committees for each day typically prepare a loose framework for how grassroots local groups should approach creating events, providing the necessary materials such as posters or HIV testing kits. A consortium of six national African-American-focused organizations have formed a strategic leadership council, for example, to partner with the Centers for Disease Control and Prevention to set the tone for this year's day for African-Americans (February 7) by promoting the slogan 'Get tested! Get educated! Get involved! Get treated!' Previously, the 'get treated' maxim was not included, but the council wanted to stress its importance this year.
Funding for the events, however, has been piecemeal. NLAAD organizers received a three-year, $150,000 grant from the U.S. Office of Minority Health in 2004. OraSure donated 25,000 rapid HIV testing kits in 2006, and the Kaiser Family Foundation usually comes through with health data. Major pharmaceutical companies often sponsor events, and they have a particularly vested interest in signing up HIVers on waiting lists for various state AIDS Drug Assistance Programs for their patient assistance programs, since the patients will likely continue on the same medications when they are eventually admitted into an ADAP.
But grabbing the attention of a distracted, possibly apathetic public requires slick marketing savvy. Each of the three major days that focus on ethnic minorities attempts to attract the most A-list of celebrities to serve as speakers. Cable Positive and Telemundo have collaborated to create public-service announcements featuring Latin American celebrities, with actress Rosie Perez heading the campaign for Cable Positive's Spanish-language PSAs. Last year NLAAD organizers boasted a collaboration with Miss Universe 2006, Zuleyka Rivera, who is Puerto Rican. Her public announcement that she would be tested for HIV to mark the day was well covered by the Hispanic media.
Enlisting the help of churches is also crucial to spreading the word on a more grassroots level. Organizers of the National Black HIV/AIDS Awareness Day encourage pastors to devote a sermon to the disease. The Reverend Gale Sampson-Lee, an apostolic minister who is the affiliate director of services for the National Black Leadership Commission on AIDS and a steering committee leader for the awareness day, says support among her religious peers is growing.
Otherwise, a hodgepodge of events is arranged by each individual group. Sampson-Lee says she recalls a particular 2004 event in Orlando, Fla., where local residents were asked to take along a pair of shoes of a friend or family member whom they had lost to AIDS. 'Then they laid them out in an everlasting circle that was so huge, and it made visible how many pairs of feet were now missing,' she says. 'And the shoes were in all different sizes. Awesome. Awesome. And people looked at the shoes, and they got it. It just goes to show how you can take an initiative like this and make it your own.'
Berumen is taking her own initiative into a new career path. Her speech at Portland's Latino awareness day has led to a job at the Cascade AIDS Project as a community health worker; there, she says, she will get to do more of what she loves--taking her message to the public.
'I just figured everything's all fine and dandy,' she says of the days before learning she was HIV-positive. 'And look what happened. I'm living proof--from bone to carne. It happened to me.'